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Some staffers are HIV-positive and have their own tragic stories to tell

Marianne Swanson closes her eyes, with smoky gray circles beneath her long lashes, as she counts the number of pills she takes every day for HIV: "One, two, three, four" in the morning, and three more at night.

They're drugs she'll need to take for life because of a virus that her late husband gave her in the 1980s, at a time when scientists were just beginning to understand AIDS. The disease claimed her husband's life, as well as two of her children.

Today, as a nurse educator at Grady Health System's Ponce De Leon Center in Atlanta, Swanson tells patients about her personal struggle with AIDS only if she thinks it will help them.

"It's not about me, it's about them," said Swanson, 55, "and helping them to be successful so that they can dream and reach the goals they would set for themselves."

One of the largest and most comprehensive HIV care centers in the country, the Ponce clinic has about 160 employees for 5,100 patients; that's one staffer per 32 patients. The patient base is expanding, and no one who meets the clinic's eligibility requirements gets turned away.

More than 70% of HIV-infected patients who live in Atlanta live within two miles of the clinic, according to the Georgia Department of Human Resources. There's also cutting-edge medical research in conjunction with the clinic, in addition to a variety of services -- from housing assistance to dentistry -- available to patients.

"People come here with a unified vision to take care of people no one else wants to take care of," said Dr. Vincent Marconi, 37, associate medical director of the clinic. "You're here not for the money, here not for the fame, but you're here purely to roll your sleeves up."

Patients get referred through health care providers and agencies, including community and faith-based organizations. But there are still many people living with AIDS in Atlanta whom the clinic has not yet been able to get into treatment, said Marconi, who is also affiliated with the Emory University School of Medicine and the Emory Center for AIDS Research. It will take larger efforts to improve patients' linkage to care, public awareness, and the many factors that make HIV transmission such a problem in Atlanta.

Poverty and drug use in Atlanta help make it the 8th highest metropolitan area in the country for new AIDS diagnoses, Marconi said. About 22% of people in the city of Atlanta have an income below the poverty level. In the 28-county metropolitan area that includes Atlanta, there are nearly 27,000 people living with HIV/AIDS, according to a 2010 report by the Georgia Department of Human Resources. In fact, this metro area represents 67% of Georgia's HIV/AIDS cases, the report said.

A large cluster, centralized in downtown and creeping outward in Fulton and DeKalb counties, represents 60% of prevalent HIV cases in the Atlanta metro area, according to a 2011 study in the Journal of Urban Health.

Within that cluster, 1.34% of the population has HIV, compared to 0.32% outside the cluster. The study found higher levels of poverty, injection drug use, and men having sex with men in the cluster than in the rest of Atlanta. HIV-positive men were more likely to live there than HIV-positive women, who likely acquired the disease from heterosexual contact.

HIV cases in this area were 78% male and 72% African-American, with 22% being Caucasian. The largest exposure categories were men who have sex with men (42%) and IV drug users (10%).

The clinic treats some of the sickest people in the area living with HIV. Adults who get treatment at the Ponce Center must have a previous AIDS diagnosis or a CD4 count that has dipped below 200. CD4 is a measure of white blood cells available to fight infection, and a count below 200 means the patient has AIDS. Dr. Wendy Armstrong, the clinic's medical director, said the current recommendation is for anyone with a CD4 count below 500 to get medications -- in fact, some say everyone with HIV should be on medication -- which means the clinic can't treat thousands more who need help.

"Systemically, nationwide, we are identifying people too late," Armstrong said.

It's hard to get enough money to do all that the clinic would like to do. "We are pretty much stretched to the seams," said Armstrong, who is also an associate professor of infectious disease at Emory University School of Medicine and an investigator in the Emory Center for AIDS research.

The clinic received $11.8 million in grant funding, federal and state, for the current fiscal year, representing about 65% of the operating budget, according to interim director Jacqueline Muther. Much of the federal funding comes through the Ryan White CARE Act, whose support to the clinic has been flat for years and recently declined, Armstrong said.

Limited Ryan White funding nationally makes it difficult for many patients to get medications; those who don't have coverage from Ryan White or their own insurance face costs of $1,500 to $2,000 a month for medications.

With more capital, the clinic could expand -- in fact, there are two undeveloped floors that have been too expensive to renovate -- but there also needs to be social change to curb transmission in the first place, Marconi said.

"My biggest frustration is that there's not enough hours in a day to take care of all that needs to be done. These people are very needy," said Lane Tatman, 56, a triage nurse who also has HIV himself. "A lot of them are homeless, have a mental illness, substance abuse (problems) and HIV and hepatitis C, and that's overwhelming to them."

First they have to get there

The clinic first began in 1986 but moved to its present location in 1993. It's an unpretentious gray building on a busy avenue that's convenient to downtown -- if you have a car. If you don't, it can be tricky.

The clinic would like to expand, but funding is tight.

The clinic serves 20 counties throughout the Atlanta's extended metro area, but the city's bus and train transportation system MARTA serves only two -- Fulton and DeKalb -- almost exclusively. The transportation system has been mired in budget woes for years; it receives no state funding for operations, according to MARTA spokesman Lyle Harris.

If the weather's nice, your best bet is to take the MARTA train to the North Avenue station and walk a little under a mile along the less-than-glamorous Ponce De Leon Ave. The gaudy Krispy Kreme doughnut sign is the best landmark; "AIDS clinic" is not written in big letters. You might miss it if you don't look up to the top of the grassy hill. or see the small Ponce De Leon Center sign by the driveway.

But that's assuming you're able to walk, and feel well enough. Otherwise, you might wait up to 50 minutes for a bus. And you have to pay the $2.50 fare. Patients who make their appointments at the clinic can receive free MARTA cards to get home, Swanson said, but they still have to get to the clinic in the first place.

Samuel, whose name has been changed at his request to protect his privacy, is one of those patients who has had transportation challenges. He's unemployed, 28, African-American, and got HIV from his ex-boyfriend, whom he didn't know had HIV. To get to the clinic by MARTA, he needs to take a bus to a train to another bus, a process that takes about an hour if timed properly. Sometimes his mother takes him. Sometimes he just can't get there.

So it's no surprise that patients show up late, throwing Swanson into a panic. She sees eight or nine patients in a day, and she has to review a lot of important information with each of them. To ease the transportation burden, she tries to schedule appointments with patients on the same day that they are using the clinic's other services, such as mental health, nutrition, dentistry and housing assistance.

"We try to bundle services, try to get as much done during one appointment," she said.

A typical day

If patients can get to the clinic, get prescriptions for medications and learn how to use them, the next obstacle is actually taking the drugs.

By taking medications properly, it's possible for patients to get their viral loads down to undetectable levels, which lowers the likelihood of transmission. Research from 2011 showed that taking HIV drugs immediately led to a 96.3% reduction in transmission of HIV to a partner who is not HIV-positive. Some people come to the clinic too late in the disease, or with illnesses that make it difficult to restore health, but there is always hope, Armstrong said.

Regardless, it can be hard to get patients to follow their drug regimen. Complications such as mental illness and substance abuse can interrupt medication-taking routines, Armstrong said. In fact, Swanson suspects many patients lie about not missing doses of their medication, perhaps out of shame or fear.

Swanson was the only nurse educator in the main clinic during the three workdays the week of Thanksgiving (it was closed on Thursday and Friday) and saw a lot of sick patients. On Tuesday, one of them was admitted to the hospital, someone else needed a follow-up appointment, and at least two had severe mental illnesses.

One patient she saw, isn't taking his medications. At the previous appointment, she had talked to him about disclosure issues, telling him he needs to be fair and reveal to his sexual partner that he has HIV. This time, he told her he's still having unprotected sex. Swanson reminded the patient that he is putting his partner at risk.

"All I can do is counsel him to take every pill, every dose, every day," she said. She also wrote on the discharge paperwork that he should encourage his partner to wear a condom.

By the afternoon she was exhausted.

While Swanson educates patients on their medications, Tatman plays the part of concierge, directing people where they need to go.

These days, almost everyone Tatman sees coming to the clinic has a cold and is worried it's going to turn into something more serious like pneumonia or bronchitis. Some patients do require more involved attention; others just "need a pat on the head," he said.

Nurse Lane Tatman has been HIV-positive since the 1980s.

But there are plenty of things for Tatman and staff to consider: For instance, HIV patients can't just grab any over-the-counter medication; they need to watch out for interactions and side effects. And if the patient has a dry cough, it could be tuberculosis. There's currently an outbreak of TB among homeless people on Pine Street, which isn't far south from the clinic itself. All patients get tested for TB at least twice a year at the clinic.

Sick, but spoiled

Tatman commonly confronts patients who have very different goals for themselves than their doctors do. The clinic staff wants patients to get on medications and stick with them and follow up with appointments. Patients want to know where they're going to sleep and what they're going to eat.

"The sad thing is that there's no stopping this epidemic. It's worse than ever. We have a lot of very young people," said Tatman. "More and more African-Americans. People are coming to us sicker than ever."

Yet patients at the clinic are also "spoiled," Tatman says, compared to the 1980s when he got his diagnosis.

Tatman remembers that when he was in his 20s and found out he had HIV, three doctors told him "I have nothing to give you, go home and die." Today, there are many options for medications, including a single pill per day for patients whose bodies can take it.

Tatman has been at the clinic for 13 years; he came because when good medicines for HIV came on the market, he wanted to help people live. He'd watched many of his friends and co-workers die; the other surviving member of the staff of a restaurant he used to work at is still a patient at the clinic.

Like Swanson, he doesn't share his story unless he thinks it will help give a patient or a patient's family member hope. He remembers that the week he found out he had developed diabetes from HIV, he also had two patients with newly diagnosed diabetes. They all learned together how to use their blood glucose meters.

"The cool thing in this building is that everyone wants to be here to work with HIV," he said. "At other places, people don't want to deal with it."

From tragedy to hope

Tatman and Swanson are more the exception than the rule -- most people who work at the clinic are not HIV-positive themselves, although those that are discuss it publicly. There are also three peer counselors living with HIV who are tasked with helping patients navigate the health care system and their personal lives.

"In general, having staff members who are (HIV-)positive provides a genuine relationship between patients and providers -- this relationship is built in part out of real empathy. It also provides the staff with a different perspective for people living with HIV," Marconi said.

Born in Brooklyn, New York, Swanson has been a nurse since 1978. She married her first husband in 1981, before the public knew about HIV. The couple moved to Atlanta originally because she wanted a better life -- "something easier, slower" -- for her son Jonathan.

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She knew that her husband struggled with his sexuality, but he wanted children, and Swanson believed he was committed to make their marriage work.

But when she was due to give birth to Jonathan, the baby didn't arrive on schedule; he was two weeks late. And that's when her husband confessed that he had an affair with a man, as if the baby was delayed because he had done something bad.

Swanson was 27 at the time and had never had children before. She couldn't imagine raising the baby alone.

"I stayed with him because he really showed a commitment to not do it again, and change, and he wanted to be a father," she said.

They had a second son, Joshua Paul, in 1985, who got sick with what appeared to be cancer in 1987. He received chemotherapy and radiation, but nothing worked; he died at 20 months old. But it wasn't cancer -- he tested positive for HIV. Soon after, so did Swanson and her husband. Jonathan tested negative.

Swanson was pregnant again.

At 6 weeks old, Swanson's daughter Annalisa had AIDS. She passed away in 1989 at 17 months old. Then, Swanson's husband's health started failing; he died in 1996.

"And I never blamed him for it, to be honest with you, because I saw the way he suffered," Swanson said. "He saw the two kids die. He did not need the burden of a wife blaming him. He didn't need me to say it."

Swanson came to the Ponce clinic in the early 1990s as a patient. She was impressed with the clinicians who took care of her; "they helped me hang on," she said.

When Swanson first started HIV medications, she had to take pills three times a day on an empty stomach -- nothing to eat for two hours before and one hour after -- meaning that, effectively, she couldn't eat for nine hours out of the day.

It was hard, and she didn't always stick to it. As a result, she built up resistance to the drugs, and has to take an even heavier regimen today.

"If I had someone (back then) to tell me to take my pills the way I was supposed to, maybe I wouldn't have had such resistance," she said. "No one told me how adherence ties to how well you do."

When Swanson came to work at the Ponce clinic in 2002, she had been out of work on disability leave for some time, and didn't know what to do with her time.

"I spent so much time planning on dying that I didn't know what I wanted to do to live," she said.

After Jonathan graduated from high school and enrolled at Georgia Institute of Technology, the only place Swanson wanted to work was the Ponce clinic. She wanted to give back, and keep up with the newest treatments and therapies.

She found that, besides offering medical treatments and social services, the clinic is also a place for cutting-edge research in HIV care and prevention. The clinic has been involved in three major initiatives -- the AIDS Clinical Trials Group, the HIV Prevention Trials Network, and the Anti-retroviral Treatment Access Study -- that have had significant impacts in the field. There is also additional research, some investigator-initiated and some pharmaceutical-sponsored, that's ongoing in treatment response, co-morbidities and other areas, Marconi said.

Being an educator

For new patients, Swanson will want to hear what their journeys have been like so far. Have they been on HIV medication before? How will it fit into their lives? Do they have a support system of friends and family? Do they have some kind of insurance?

Some patients are waiting for drugs from Georgia's AIDS Drug Assistance Program, a state-administered, federally funded initiative that gets HIV medications to low-income patients. But the demand is too great for what has been budgeted. Nationwide there are over 6,400 people on ADAP waiting lists; 1,455 of them are in Georgia.

"We have to get very creative in the way that we get patients medications," she said.

One of Swanson's biggest frustrations is that many patients are working and have a salary, but don't have insurance, and because they don't qualify for Ryan White fund assistance, they don't qualify for services.

"If you make $36,000 a year and don't qualify for Ryan White, how am I going to get that patient medication?" Swanson asks. "That's frustration."

Patients who can't get the drugs sometimes spread the word that they need them, and will find others who aren't on their therapy anymore and have unused drugs. Sometimes the clinic has to change patients 'drug regimens in order to get them on any therapy at all.

Most of the time, patients have no idea, so she tells them to flip those words and turn the phrase into "load of virus." Then she'll explain how medications work and how they're supposed to boost T cells in the body.

Swanson and colleagues will still allow patients who are using crack cocaine or methamphetamine to start HIV treatment, even though these illegal drugs may increase virus propagation. These substances may also lead to other behaviors, such as unprotected sex, that can result in "superinfection" with new strains of the virus, Marconi said. Those new strains may be resistant to the HIV drugs the patient is currently taking.

One patient has been off his medications since July. Swanson tries to get him to come up with a reason. Staff at the clinic try to get patients to tie taking their medications to activities that they do every day anyway, like eating and sleeping.

Swanson wants to know if the patient is using alcohol, recreational drugs or herbal remedies that may interfere with his ability to be on medication. Some patients may also hold beliefs that get in the way.

Sometimes all that takes up an hour-long appointment, but if Swanson has a motivated patient who's eager to get started, and it doesn't make sense to wait, she'll talk more specifically about the medications. Swanson doesn't prescribe them herself; a doctor writes the prescription, and Swanson gets it to the pharmacy. It's Swanson's job to educate patients about how to take the medications and how often. She'll lay the pills out so the patient can see what they look like.

There's a "one-pill wonder" that's approved as a starting regimen, containing three drugs at once -- in other words, while Swanson herself takes seven pills a day, some people with HIV are able to take just one. But not everyone can take that pill; it depends on a patient's resistance levels. Doctors also want to see kidney and liver function before choosing a medication regimen. Other regimens might be three or four pills during the day, or two at once and one at a different time.

Samuel, one of her patients, appreciates all that Swanson has done in terms of answering questions about the medications. He takes four pills a day, and knows he can rely on Swanson for advice.

"I was nervous at first, scared about going," he recalls. "Once I got there, I got comfortable with the doctors and the people. I got used to it."

Despite having a different background from many of her patients, Swanson still feels connected to them.

"The only difference I feel sometimes between me and the patient is the fact that life didn't catch me," she says.

For those patients she has told about her own experience, Swanson knows her story has given some of them hope, since they see that she has been successful in treatment.

"I feel like I've been able to help provide the light at the end of the tunnel, so to speak," she says.